Written answers
Thursday, 22 June 2023
Department of Health
Disease Management
John Paul Phelan (Carlow-Kilkenny, Fine Gael)
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386. To ask the Minister for Health if a new liaison person within his Department has been appointed to oversee implementation of the national rare disease plan; if a review conducted by the former liaison person will be published; and if he will make a statement on the matter. [30429/23]
Stephen Donnelly (Wicklow, Fianna Fail)
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In February I announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government.
The development of the new Plan is currently being progressed through the Office of the Chief Medical Officer in conjunction with the HSE's National Rare Disease Office, and will include a review of the previous National Rare Disease Plan 2014-2018.
This review will consider areas of the previous Plan that need to be further progressed, while also looking to the future and the needs of those patients and families living with a rare disease diagnosis.
An interim report on the National Rare Disease Plan 2014-2018 is published at the following link: www.gov.ie/en/publication/e45dd9-interim-report-on-national-rare-disease-plan-for-ireland-2014-2018/
John Paul Phelan (Carlow-Kilkenny, Fine Gael)
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387. To ask the Minister for Health his views on the ARDCI Rare Disease Pledge; whether he agrees with each of its recommendations; and if he will make a statement on the matter. [30430/23]
Stephen Donnelly (Wicklow, Fianna Fail)
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While my Department is not familiar with the organisation referenced in the parliamentary question, the Deputy will be aware that I recently announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government.
The development of this new plan will consider areas of the previous Plan that need to be further progressed, while also looking to the future and the needs of those patients and families living with a rare disease diagnosis.
Initial work for the new plan has commenced, and due consideration is being given to how it can best meet the needs of patients and families affected by a rare disease.
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